Monday, March 14, 2016

The Family Caregiver: A Four Part Series

The
spiritual concern for most families is crisis.Their sense of crisis may be characterized by the following:

§Anxiety/anger at the disease
process:Many families are overwhelmed
by anxiety due to the issues of engaging hospice including the following:

§Signing of the Do Not Resuscitate
Order (not mandatory).

§Deciding to remove a breathing
tube.There is not any event in the
decision-making process at end-of-life that evokes more anxiety than the
decision to remove a ventilator or breathing tube.Family members often believe that if they
decide to remove the ventilator they are killing their loved one.The Chaplain must use his/her pastoral care
skills with great precision in assisting a family at this point.What the family does not need is the Chaplain
to do a lot of talking, but, instead, the Chaplain needs to listen and reflect
what is being said which helps clarify for the family what it is they are
feeling.Extubations may take place in
the following venues: a hospital or a hospice house.The family may or may not be present when the
tube is removed.There may be a
physician (usually an experienced hospice physician will remove the tube in a
hospice house and will use great care and communication skills as he/she
proceeds with the extubation) or a respiratory therapist conducting the
procedure.The Chaplain is present with
the family to listen to their concerns.Her experience with this procedure will be used to provide comfort, support,
and understanding for the family.The
Chaplain’s peaceful demeanor will be of great comfort to the family.Two actions the Chaplain will take will make
the family’s anxiety abate a good deal: first, the Chaplain informs the family
in response to their questions about the procedure; Secondly, the Chaplain will
be with the family during the procedure.It is at this point that silence is in order as the family will need to
focus on their loved one.Speak when
spoken to is the watchword and speak sparingly is the wisdom at this time in
the procedure.

§Deciding to withdraw or withhold
food and water.The Chaplain’s expertise
at providing not only spiritual/pastoral care, but correct information is at
stake at this juncture.The family needs
support and information.While the
Chaplain is not the sole source of information regarding this medical matter,
the Chaplain is knowledgeable about the issue.Because food and water are symbols of love and care, this issue is
significant for families.It is
suggested that the Chaplain identify the feelings family members are expressing
and provide support.The Chaplain
becomes an educator to explain other ways the family may show love and
care.Reviewing characteristics of
natural death may help: loss of appetite, decreased fluid intake, the body’s
desire to cease living.Providing
artificial food and hydration may make the dying process complicated by
inducing breathlessness, ascites, nausea and vomiting, and edema.This is where a family must review their
desires and wishes to best provide for their loved one.Certainly, this is difficult for the family,
but death is a natural and normal part of life.The Chaplain compassionately reinforces this reality.

§Deciding on a surrogate to fill the
void of decision-making in the dementia patient or non-responsive patient

§Making funeral plans.

§Surrendering what appears to be
autonomy in choosing medical interventions.

§Observing their loved one decline
throughout the disease process. Yet others present with anger regarding what
the disease has done and is doing to their loved one.That anger may be directed at God or an
institution (hospital, nursing home, even hospice), or it can be felt deeply
inside, but not outwardly identified.This can burn a hole in one’s soul, not to mention, one’s stomach
lining.

§Shame and ridicule by others.This may sound odd, but in some cases family
caregivers are recipients of emotional and verbal abuse from their loved-one
patient.Anecdotal evidence of this
serves as a clear explanation:

The
constant battle with my husband, Barry, these last ten years has hardened my soul.It is difficult enough being a Family Caregiver but to have to care for
someone who is constantly combative and abusive can wear you down after a
while.

Barry,
who was always a quiet guy before his stroke ten years ago, has turned into a
mean person who will verbally demean and push buttons to create arguments,
leaving me feeling devastated and emotionally depleted.Some days I worry about my health, feeling
heart pain and dizzy spells; concerned about strokes. (Update: had a mild
stroke early April, life goes on.)

Barry
suffers from brain damage caused by two strokes which has developed trauma
induced narcissistic personality disorder.So no matter how corrosive Barry can be, he is not fully responsible for
his behavior.

The
battering cycle will start with Barry verbally demeaning me, and then I will
pull away from the hurt to regain my balance. Barry becomes Mr. Nice Guy for a
little while to regain my trust and then verbally batters me all over again.A very vicious cycle, where I must remain
understanding and strong; but I am only human.

Barry
knows his behavior towards me is wrong and will only mistreat me when we are
alone.On a few occasions, when Barry
thought we were alone, has a family member witnessed Barry’s treatment towards
me. A small victory for me knowing someone else now understands Barry’s
behavior towards me.

At
one time, I even had to consider when Barry’s body was resuscitated back from
the dead, Barry’s spirit had passed over to the other side, only to have an
earth bound evil, malicious spirit enter his body. I must consider all possible
options to this demise, as I shelve the thought to the back of my mind as a
possible factor for Barry’s meanness.

On
occasion, I have broken down and become absolutely enraged from Barry’s
constant verbal abuse; having reached my limit, which unfortunately this is
exactly what Barry wants – to push me over the edge, to see me lose it, so
Barry can now take my anger and use it against me.I am made to look and feel like the bad
person and he is the victim.

When
Barry passes away, not only will I have to grieve for his death, but also
grieve for the entire trauma I have had to endure caring for him all these
years. The only way I am surviving this, is that I have become a hard boiled
egg – my shell may be broken but I still have a lot of bounce inside.

If
Barry was institutionalized in long term care, the medical staff would find his
behavior abusive and even disruptive, resulting in Barry being sedated.No matter how abusive Barry becomes I would
not want him sedated, so I keep searching for alternative solutions.Family Caregiver
H.U.G.S.: CAREGIVER HELP: Stress, Abuse and Bullying: The Caregiver’s Shame,
August 8, 2013